Case 1: The public voice informs HIV service planning at Vancouver Coastal Health

Margreth Tolson, Leader, Community Engagement
Vancouver Coastal Health

Introduction

Seek and Treat to Optimally Prevent (STOP) HIV/AIDS is a ground-breaking $48 million, four–year pilot project (2009-2013) funded by the BC Ministry of Health to improve HIV testing, treatment and support services in BC, with the overall goal of reducing the incidence of HIV incidence. Project partner organizations include Vancouver Coastal Health, Northern Health, Provincial Health Services Authority, Providence Health Care and the BC Centre for Excellence in HIV/AIDS.

The STOP project focuses on individuals living with multiple barriers to care, including addiction, mental health issues, homelessness and other social or environmental factors. Launched in Vancouver's inner city and Prince George — two communities identified as priority sites for the project because they represent the majority of BC's HIV cases and have increasing rates of HIV/AIDS — the STOP project has identified community partnership as a critical success factor for an accountable, responsive and effective pilot project. To ensure community participation, the provincial STOP Leadership Committee recruited four community representatives (nominated by HIV organizations) from the outset of the project to ensure that diverse voices from local HIV communities informed the planning and implementation of the project.

Why citizen engagement?

From the beginning of the Vancouver portion of STOP HIV/AIDS, Vancouver Coastal Health (VCH) leadership expressed a strong commitment to community involvement so that the pilot project would be tailored not only to reflect the actual needs and conditions of marginalized communities, but also to increase project impact among hard-to-reach populations.¹ A crucial part of this focus was the role of the VCH Community Engagement (CE) department, which was invited to develop and enact mechanisms for ongoing community discussions. Working in partnership with the Vancouver-based community representative from the provincial STOP Leadership Committee, CE staff sought the experiences and recommendations of people living with HIV so that their perspectives would influence the health authority's decision making on project priorities throughout STOP's duration. While the VCH CE department facilitated these discussions with members of the public, the VCH STOP leadership facilitated equally important discussions with staff from community-based organizations (CBOs).²

Methods: Phase one (May — September 2010)

Initial challenges

In May 2010, VCH CE staff contacted CBOs to explore how best to collaborate in forming the consultation groups. These initial discussions were often challenging because CBO staff were cautious of the intentions of the STOP project, and they were unsure of how (or even if) the VCH CE department would use the community discussion results in the decision making process. Furthermore, all stakeholders had strong concerns about a possible conflict of interest in this community engagement project. Many CBOs wondered how project funding would be allocated, how their involvement might influence distribution of funds, and how CBO feedback could be incorporated if they did not have members who could participate in public groups.

To navigate this complex, highly politicized, and very visible project, it was important for VCH CE staff to work in collaboration with the community representative, a person living with HIV who was a well-known member of the community. CE staff also wrote a detailed project charter, signed by VCH CE and VCH STOP leadership, that clearly stated the:

• scope of influence of this consultation;
• commitment of VCH CE and VCH STOP leadership to the public release of the consultation results;
• dedication of that same leadership to the development of sustainable mechanisms for ongoing and meaningful public involvement for the length of the VCH STOP HIV project;
• CE department's role in consulting with members of the public only (and not with CBO staff); and
• agreement that VCH leadership would consult with CBO staff.

It was hoped that by drawing this clear boundary between public and CBO staff consultation, the integrity of the CE department's consultation process would be protected from any perception of unfair bias in VCH's STOP funding and program decision making. Furthermore, to dispel concerns that some CBOs and populations may not have access to the CE public consultation, a half-day workshop was held with all CBO staff so that their experiences and recommendations could be incorporated into decision making.

Discussion groups: Preparation

CBO and VCH staff collaboratively identified key priority populations for the CE consultation. These populations included: Aboriginal peoples, youth, people with mental illness and/or addiction, immigrants and refugees, gay men and marginalized populations of men who have sex with men, homeless persons, and injection drug users. The community representative worked with CE staff to plan and conduct the engagement process. Discussion groups were identified as the most appropriate methodology for this phase of the pilot project so that people could share their experiences and build on each other's ideas for improved models of service.

The goal of these groups was to capture the experiences of both people living with — and at risk for — HIV, gathering information about gaps in HIV services and how best to meet the needs of highly marginalized groups. It was recognized that, due to continuing and profound stigma, it would be potentially harmful to ask participants from some groups about their HIV status or to comment on services specific to HIV treatment. For that reason, two discussion guides were developed (one for only Testing Services, and one for Testing, Follow-up and Treatment Services), but both discussion guides asked the same two essential questions:

1. What is working or not working in these services?
2. How can we improve access to these services?

CE staff met with CBO representatives and co-facilitators before each focus group (several times in some cases) to discuss the goals of the work, to engender trust in the intention of the project, and to develop jointly an approach to the discussion group that would best meet the needs of their clients. Discussion group formats and guides were adapted in order to meet the unique needs of each specific group. For example:

• One large discussion group would not be effective for homeless clients living with severe mental illness, so several small discussion groups and one-to-one interviews were instead conducted during their regularly-scheduled breakfast at a clinic.
• Latin American youth living illegally in Vancouver cannot access health services, and they requested health testing and education in addition to the consultation. This service was facilitated by Spanish-speaking staff and arranged in partnership with street nurses during a Friday night "clinic and pizza" event.
• Aboriginal women from rural areas in BC often come to Vancouver for a range of services. A discussion group providing basic HIV information (something rarely available in remote areas) was co-facilitated with a First Nations HIV educator in a shelter for women who have experienced domestic violence.

Discussion groups: Process

All discussion groups were co-facilitated by CE staff and the STOP community representative and/or a representative of the partner CBO. Some discussion groups were scheduled to coincide with an already-existing event. Other groups were recruited via posters, phone calls, personal contact and online outreach.

The 13 discussion groups were conducted during June and July 2010, including two groups in Spanish. The 113 participants reflected diverse age groups and Vancouver neighbourhoods, and the content of these discussions was summarized in a September 2010 report for VCH STOP leadership (see Table 1). In keeping with the VCH CE department's commitment to transparency and accountability, this report was mailed (and emailed) to all participants and CBOs. It was also published on the VCH website. VCH STOP leadership then combined the results of this work and a literature review with feedback on the meetings from clinicians, CBO staff and other service providers, in order to develop and prioritize pilot project strategies.

Methods: Phase two (January — March 2011) and phase three (October — December 2011)

In December 2010, CE staff re-commenced meetings with VCH STOP leadership to plan the next phase of public consultation. Pilot project strategies had been tentatively determined (and in some cases already implemented), and VCH STOP Leadership identified key themes to be discussed by members of the public in order to inform the more detailed planning of health services that was to begin on April 1, 2011. CBO partners were again contacted to host these discussions, and they were once again extremely helpful: due to the careful partnership-building in Phase One, they were able to set up the second round of discussions very quickly.

A brief presentation was given at the beginning of each discussion group, reporting on the:

• themes and recommendations from Phase One;
• results of how public feedback from Phase One had been used and implemented; and
• questions for this second phase of consultation.

Participants were also asked for their recommendations on possible models for ongoing engagement that would allow the public to monitor the STOP project (until March 2013) as it is implemented.

Provisions were made to welcome experiences and ideas outside of the prescribed topics, and a commitment was made to present any additional concerns that arose as "Community Alerts" in the Phase Two report. The 12 discussion groups and 130 participants again reflected diverse age groups and neighbourhoods. As with Phase One, the report for Phase Two was sent to all stakeholders and published on the VCH website.

For future phases of public consultation, Phase Two participants agreed that the model of semi-annual feedback and discussion was effective, and that it was important for VCH STOP leadership and members of the public to maintain an ongoing dialogue throughout the project. Discussion groups were perceived to be an effective method of gathering input, but people also suggested that some discussion groups should include HIV education (on a variety of topics) and that online surveys should also be available for those who cannot participate in group discussions (or who do not wish to do so).

At the time of writing, Phase Three is currently in development with VCH STOP leadership, and it will reflect the recommendations that have arisen from the previous phases. In order to support VCH's planning for HIV services that will follow STOP after the project finishes in March 2013, community discussions will continue on a six-month rotation until Fall 2012.

Outcomes and impact

Recommendations from public participants had the following direct influence on the VCH STOP HIV/AIDS pilot-project:

Peer involvement

A large new network of community-based peer workers has been funded through CBOs to provide HIV tests and ongoing support to newly diagnosed patients. This network will also work with the STOP Clinical Team to provide HIV outreach services.

Provision of medical services in non-clinical locations

The STOP HIV Clinical Team provides testing and treatment in partnership with many non-clinical locations, including shelters, drop-ins and community centres.

Services for immigrants and refugees

A clinic for people who do not have medical insurance is now established, services for uninsured individuals with HIV are now available at all VCH clinics, and access to interpreters is now embedded in this work.

Public health messages

Messages to encourage testing and treatment have been specifically tailored to meet community standards and norms (e.g. "What's Your Number" for the gay men's community).

For VCH STOP leadership, the ongoing multi-phase consultation with members of the public and CBO staff contributed to:

• building trust with partners, stakeholders and the public by showing that VCH STOP is committed to community involvement and partnership in this project;
• increasing trust with CBOs and reducing barriers to partnerships with those organizations, thereby improving services for clients; and
• strengthening existing partnerships with key communities, which results in population-specific engagement strategies being facilitated by CBOs themselves (and not mediated by the VCH CE department).

Lessons learned

Four key lessons were learned during the planning of the STOP HIV/AIDS pilot project.

1. Collaborative community partnerships are key to successful public engagement and effective services.

A number of different partnerships have contributed to this project's success:

• The partnership between VCH CE and the community representative from the provincial STOP Leadership Committee is critical to the credibility of VCH CE's work;
• The partnership with CBO representatives is crucial to the success of VCH CE's work in bringing community feedback into leadership decision making; and
• The partnership between VCH STOP leadership and CBO partners is essential to creating services that are practical and accessible, thereby facilitating patient uptake of these health services.

It was gratifying to see these lessons reflected in VCH's prioritization of resources in the pilot projects, such as the greatly enhanced support for peer-based work and the partnering with CBOs to provide a comprehensive range of clinical services. It is hoped that these partnerships will also have an impact on the VCH STOP project's success in achieving reduced HIV incidence in our region.⁴

2. The scope of influence of all public consultation must be acknowledged clearly and honestly.

Maintaining honesty with partners, stakeholders and the public about the scope of influence for their input is important. Given the complexity of relationships between provincial, regional and local stakeholders, in addition to the size and visibility of the project itself, it is not possible (or accurate) to attribute project decisions specifically to public input. Some priorities that were considered key at the community level are not priorities in the provincial plan (such as preventative education, ongoing disease management education, and communication skills training for health care providers), and they have therefore not been implemented.

While it is impossible to say "the public voice changed THIS," public recommendations were used to shape, support, or justify specific agendas, and in this, it was fortunate that VCH STOP leadership was largely formed of people who understand and support community priorities.

3. Careful and collaborative preparation of discussion topics contributes to the integrity of process.

Regular and ongoing communication between VCH CE staff and VCH STOP leadership ensured that the discussion topics in each phase of the consultation were carefully selected and phrased in a way that made the public feedback sought directly relevant to upcoming plans. Preparation included intensive discussions regarding the clarity and accuracy of questions, as well as VCH's ability to use the feedback. Similarly intensive discussions were also conducted with CBO partners in order to develop the question guides. This ensured that the discussions would be sensitive, relevant, and meaningful for their clients that chose to join the consultations.

4. Stigma continues to form a key barrier to health services, but community involvement can assist in building bridges.

Stigma still has a profound impact on people's willingness to be tested for HIV, acknowledge their HIV status, or engage with health care providers. HIV also disproportionately affects people who already experience strong societal judgment and encounter multiple barriers to accessing services from health care providers and other institutions. Public consultation and community involvement, however, can greatly assist in building trust with marginalized communities whose access to health services is compromised by stigma. This lesson is also applicable to many other areas of health service, such as mental illness, eating disorders, and addictions.

Date modified:

2013-11-18